Posted 8:24 pm Tuesday, December 11, 2012
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Daughter's fatal conditions make family live day to day
photo by Sarah A. Miller/Tyler Morning Telegraph
Tammy Wolven holds her daughter Tiffany, 2, at The Children's Park in Tyler November 14.
On a sunny fall afternoon, Tiffany Wolven playfully giggled and moved around, soaking up her first experience at The Children's Park in Tyler.
The 2-year-old appears normal, smiling big and seemingly enjoying herself. But the outing is rare for Tiffany, who is more accustomed to therapy and doctor appointments.
She was born with a skin-covered cyst on the back of her head, which was repaired at 10 weeks old, and was diagnosed with several rare genetic diseases: Arnold-Chiari type III, which affects her bone structure, Meckel-Gruber Syndrome, which affects her lungs and kidneys, and Sandifer's Syndrome, which causes seizures. She also has a movement disorder.
Tiffany is listed as day-to-day, meaning she could die at any moment. If her retching does not get under control, she isn't expected to make it to her fourth birthday.
“She has severe gagging and retching. She'll do it so violently, it will kick her into seizures, so we have to be careful how we feed her and the times of day we feed her,” her mother, Tammy Wolven, said. “It's a pretty rough road to hold.”
The road that she and her husband, Michael Wolven, have walked began when Mrs. Wolven was pregnant.
Everything looked typical on her 14-week ultrasound, but she became fatigued in the following weeks, she said. She went to the emergency room and the doctors did blood work. She was sent home but received a call the next day, when she learned that a spot on the baby's head looked “suspicious.”
At one point, the Wolvens said two doctors told the couple their daughter was terminal, that the pregnancy would be toxic to Mrs. Wolven, and the best thing to do was have an abortion.
“It was devastating,” Mrs. Wolven said, who already had lost a child not long after birth.
Her husband said, “It was hard. You don't know what to do, where to go or who to turn to.”
Mrs. Wolven was denied an abortion due to potential complications, she said. The couple ended up going to a women's clinic in Shreveport, La., and almost went to Canada to have the procedure, which doctors recommended.
But Mrs. Wolven said she called her insurance company, and a representative stayed on the phone with her for hours trying to help.
The 2-year-old appears normal, smiling big and seemingly enjoying herself. But the outing is rare for Tiffany, who is more accustomed to therapy and doctor appointments.
She was born with a skin-covered cyst on the back of her head, which was repaired at 10 weeks old, and was diagnosed with several rare genetic diseases: Arnold-Chiari type III, which affects her bone structure, Meckel-Gruber Syndrome, which affects her lungs and kidneys, and Sandifer's Syndrome, which causes seizures. She also has a movement disorder.
Tiffany is listed as day-to-day, meaning she could die at any moment. If her retching does not get under control, she isn't expected to make it to her fourth birthday.
“She has severe gagging and retching. She'll do it so violently, it will kick her into seizures, so we have to be careful how we feed her and the times of day we feed her,” her mother, Tammy Wolven, said. “It's a pretty rough road to hold.”
The road that she and her husband, Michael Wolven, have walked began when Mrs. Wolven was pregnant.
Everything looked typical on her 14-week ultrasound, but she became fatigued in the following weeks, she said. She went to the emergency room and the doctors did blood work. She was sent home but received a call the next day, when she learned that a spot on the baby's head looked “suspicious.”
At one point, the Wolvens said two doctors told the couple their daughter was terminal, that the pregnancy would be toxic to Mrs. Wolven, and the best thing to do was have an abortion.
“It was devastating,” Mrs. Wolven said, who already had lost a child not long after birth.
Her husband said, “It was hard. You don't know what to do, where to go or who to turn to.”
Mrs. Wolven was denied an abortion due to potential complications, she said. The couple ended up going to a women's clinic in Shreveport, La., and almost went to Canada to have the procedure, which doctors recommended.
But Mrs. Wolven said she called her insurance company, and a representative stayed on the phone with her for hours trying to help.
She ended up going to a doctor in Houston, who did testing that other doctors didn't.
After the tests, she said the doctor indicated things weren't as bad as she was told: a small portion of Tiffany's brain was still herniated, but it could be repaired.
So she said she and her husband decided to give Tiffany a chance.
Mrs. Wolven traveled to Houston every three weeks toward the end of the pregnancy. Tiffany was scheduled to be delivered on Dec. 8.
However, days after Thanksgiving, Mrs. Wolven had eclampsia — a life-threatening condition for pregnant women — and had to be flown by helicopter to Houston.
Her husband didn't arrive until after Tiffany was born, and Mrs. Wolven, a diabetic, was in the intensive care unit for days.
Wolven said during this time, he was told his daughter and wife were in grave condition.
Today, the couple travels to a Houston hospital with their daughter several times a month.
During a recent November visit, she was supposed to be in the hospital for three days, but it ended up being nine because of her feeding problems.
Tiffany has two ports for her nutrition — one into her stomach and another into her intestines. She also has to battle epilepsy and sleep apnea on top of her feeding problems and genetic disorders, her mother said.
For Tiffany's father, a typical day begins at midnight when his wife comes to bed. He stays up all night with his daughter because of her movement disorder, which can force her into seizures. He then leaves home about 6 a.m. for work at the Skyview-Hodge prison unit in Rusk.
Mrs. Wolven, who is disabled, has had to have multiple back surgeries and a radical hysterectomy, among other things.
She is at her Flint home with Tiffany almost all the time because of complications with her daughter's conditions.
After the tests, she said the doctor indicated things weren't as bad as she was told: a small portion of Tiffany's brain was still herniated, but it could be repaired.
So she said she and her husband decided to give Tiffany a chance.
Mrs. Wolven traveled to Houston every three weeks toward the end of the pregnancy. Tiffany was scheduled to be delivered on Dec. 8.
However, days after Thanksgiving, Mrs. Wolven had eclampsia — a life-threatening condition for pregnant women — and had to be flown by helicopter to Houston.
Her husband didn't arrive until after Tiffany was born, and Mrs. Wolven, a diabetic, was in the intensive care unit for days.
Wolven said during this time, he was told his daughter and wife were in grave condition.
Today, the couple travels to a Houston hospital with their daughter several times a month.
During a recent November visit, she was supposed to be in the hospital for three days, but it ended up being nine because of her feeding problems.
Tiffany has two ports for her nutrition — one into her stomach and another into her intestines. She also has to battle epilepsy and sleep apnea on top of her feeding problems and genetic disorders, her mother said.
For Tiffany's father, a typical day begins at midnight when his wife comes to bed. He stays up all night with his daughter because of her movement disorder, which can force her into seizures. He then leaves home about 6 a.m. for work at the Skyview-Hodge prison unit in Rusk.
Mrs. Wolven, who is disabled, has had to have multiple back surgeries and a radical hysterectomy, among other things.
She is at her Flint home with Tiffany almost all the time because of complications with her daughter's conditions.
“You have to live in the everyday moment-to-moment, because one minute you can have her, (and) the next minute she can succumb to complications,” Mrs. Wolven said.
Her husband agreed, saying, “You just get up and you deal with it. You put one foot in front of the other. You don't have time to cry or boohoo about it. … I could, but what good will it do me or my wife?”
Mrs. Wolven said last Christmas was the first time she and her husband got to take Tiffany to the mall or go anywhere with her, and she was able to get her photograph taken with Santa Claus.
The couple, married more than four years, typically does not get to take their daughter out of the house or do much with her because of her conditions. With her feeding schedule, she only has a three-hour window to do anything during the day, Mrs. Wolven said.
Tiffany must be hooked to a feeding pump for more than an hour during the day.
At night, she has to be hooked up to a feeding pump continuously for 12 hours.
And death could come at any moment.
“She could be playing and have a seizure and be gone like that,” Wolven said.
It's a fact the father knows all too well.
In May, Tiffany was playing and then suddenly needed resuscitation. It took about half an hour to save her.
But throughout the challenges, they have learned much.
“I've learned to really persevere and appreciate each day I have with her and know that I am truly blessed because she is a miracle, and fighting for her … was the right thing to do, because I treasure every moment that I have with her,” Mrs. Wolven said.
She said her experience with her daughter also has brought her closer to her faith and helped her become stronger as a person.
Her husband agreed, saying, “You just get up and you deal with it. You put one foot in front of the other. You don't have time to cry or boohoo about it. … I could, but what good will it do me or my wife?”
Mrs. Wolven said last Christmas was the first time she and her husband got to take Tiffany to the mall or go anywhere with her, and she was able to get her photograph taken with Santa Claus.
The couple, married more than four years, typically does not get to take their daughter out of the house or do much with her because of her conditions. With her feeding schedule, she only has a three-hour window to do anything during the day, Mrs. Wolven said.
Tiffany must be hooked to a feeding pump for more than an hour during the day.
At night, she has to be hooked up to a feeding pump continuously for 12 hours.
And death could come at any moment.
“She could be playing and have a seizure and be gone like that,” Wolven said.
It's a fact the father knows all too well.
In May, Tiffany was playing and then suddenly needed resuscitation. It took about half an hour to save her.
But throughout the challenges, they have learned much.
“I've learned to really persevere and appreciate each day I have with her and know that I am truly blessed because she is a miracle, and fighting for her … was the right thing to do, because I treasure every moment that I have with her,” Mrs. Wolven said.
She said her experience with her daughter also has brought her closer to her faith and helped her become stronger as a person.
Wolven said he realizes he and his wife are lucky because they see many children come into the hospital in bad condition and with no parents.
“I know it could be so much worse yet so much better,” Wolven said, adding that other fathers have cried on his arms.
He added, “The Fact that she's already died on me once — how do you fathom that? You don't.”
Wolven said that as a parent, he also loses some emotional attachment to his child when she is in that day-to-day condition.
“Yes, you love your child so much, but yet you have to keep that one little step back because you know it has already happened,” he said.
“You aren't getting the full effect of being parents because you have to hold back some.”
Mrs. Wolven said she and her husband pick on each other because if they weren't cracking jokes, they'd be crying all the time.
The couple said their intention with their story is to give people a glimpse of hope and a reason to fight for their child.
A Run For Hope Benefit Barrel Race for the Wolven's is scheduled for Saturday to help the family with medical and transportation costs.
“You have to put in that fight and that try and give it that chance, and she's living proof of that,” Mrs. Wolven said.
The benefit will be held at Branded by Christ Cowboy Church arena off Texas Highway 110 in Rusk, with exhibitions starting at 10 a.m.
Pre-entries must be received by Thursday and are available at ebarrelracing.com or by emailing Mrs. Wolven.
For more information such as donating silent auction items or prizes, contact Tammy Wolven at 903-952-5391 or at txnbhabarrelracer@yahoo.com.
“I know it could be so much worse yet so much better,” Wolven said, adding that other fathers have cried on his arms.
He added, “The Fact that she's already died on me once — how do you fathom that? You don't.”
Wolven said that as a parent, he also loses some emotional attachment to his child when she is in that day-to-day condition.
“Yes, you love your child so much, but yet you have to keep that one little step back because you know it has already happened,” he said.
“You aren't getting the full effect of being parents because you have to hold back some.”
Mrs. Wolven said she and her husband pick on each other because if they weren't cracking jokes, they'd be crying all the time.
The couple said their intention with their story is to give people a glimpse of hope and a reason to fight for their child.
A Run For Hope Benefit Barrel Race for the Wolven's is scheduled for Saturday to help the family with medical and transportation costs.
“You have to put in that fight and that try and give it that chance, and she's living proof of that,” Mrs. Wolven said.
The benefit will be held at Branded by Christ Cowboy Church arena off Texas Highway 110 in Rusk, with exhibitions starting at 10 a.m.
Pre-entries must be received by Thursday and are available at ebarrelracing.com or by emailing Mrs. Wolven.
For more information such as donating silent auction items or prizes, contact Tammy Wolven at 903-952-5391 or at txnbhabarrelracer@yahoo.com.
